Saturday, December 26, 2015

The Importance of Awareness; The Beauty of Acceptance

We just got back from visiting friends and family a few days ago. On our trip with multiple get togethers something pretty amazing happened. There were still meltdowns when his senses were assaulted . There was still screaming from time to time when his anxiety got the best of him. There were still tears from communication breakdowns. There was still aggression when communication wasn't working. It was all still there. But there was a difference. There was no staring or gawking. There were no harsh remarks. There was a lot of accommodating and many had their get togethers set up with us in mind. No one batted an eye when he saw a Christmas tree and screamed for presents (at people that had already given him presents the day before). We worked through it all and I didn't feel embarrassed or on edge. They got it. And because they got it there was also a lot of laughter. There were a lot of moments that he enjoyed. He made memories and made friends because they accepted him for him.
The reason they got it: Every friend and family member we visited follow my blog and are learning as much as they can about what he goes through with his senses and his communication issues. They also know how hard he has worked to be doing as well as he is. That is awareness, people.

"Awareness" is becoming a bad word in autism/disability groups. One of my favorite groups is imploding due to this argument and I have since left the group, because no one has time for circular arguments that go nowhere. Some self advocates are asserting that parents aren't supposed to talk or write about a disability that isn't their own, an argument that completely disregards the reality that some of our children may not ever be able to advocate for themselves. We are not mommy martyrs for telling about the hard days. We are not objectifying those with disabilities to make us feel better about ourselves when we share stories of accommodation and acceptance. We are, instead, showing the world what accommodation and acceptance looks like and how it can make a difference for individuals with disabilities.
Acceptance is, of course, more crucial than awareness. But how can those outside of our community accept what they do not know? How can they understand what we do not tell them? Had I never laid out what sensory overload looks like, our friends may have thought he was just weird or a brat. Had I not explained that aggression can be part of one of his meltdowns, they may have thought he was just aggressing to get his way. Had I not explained his rigidity and need for meeting expectations, their feelings may have been hurt when he yelled for more presents. Do not discount awareness; there is something to it. Awareness lays the path to acceptance, whether or not others choose to follow that path is up to them.
To those that went the extra mile to make us not only feel accepted, but welcomed, I say thank you. And I say thank you because it's not enough to just know about his differences, it means so much more to accept them.

Friday, December 4, 2015

Today he rode the short bus and it was perfect

I will be the first to admit there was a time in my life when the thought of my child riding the "short bus" felt like a devastating blow.  It wasn't so much the stigma attached to it as it was the far reaching implications of such a need and the realization that things would be so different for our family.  When we realized we were going down a special education path I envied my friends who would worry about things like PTA meetings and bake sales.  Following our son's autism diagnosis and prognosis I worried endlessly about his future.  I worried everyday about how tomorrow would unfold.  The weight of so many unknowns was palpable.

As our son's aggression, anxiety and sensory issues worsened and interfered hourly with his quality of life my worries early on about giving up "normal" seemed petty and ignorant.  As I watched him so often crippled by his fear and pained by his senses, the only thing that mattered was helping him through every anxious moment and holding on to the happy moments that were so far and few between.  During the harder days when he was without services, without mental health care and without proper education, I didn't have enough energy to think about tomorrow or ten years from now.  I was spent just trying to keep everyone in our house safe from one minute to the next, including our son who would self-injure as well as aggress towards his siblings and me.

With his anxiety taking over, the hope of him attending a regular school in a special ed classroom started slipping away.  I was no longer obsessed with him mainstreaming or "fixing" his delays, that was the least of our problems.  When he shook, and screamed and got sick when we all tried to go on a bus for a special outing, I knew he probably would never ride the bus even if he could attend public school.  During the weeks he couldn't even leave the house without incident or sensory overload that affected him for days, I would have fully embraced my son going willingly on a bus (whatever size) to a school that could accommodate him.

So today when he rode the short bus for the first time on a class field trip, I had tears in my eyes and hope in my heart.  He looked back at me about a hundred times to make sure I was sitting in the seat behind him, but he smiled and got a thrill when the bus accelerated.  Guiding him onto the bus and asking him to sit next to him was a little boy that has taken to him since the start of the year. As the teacher explained all that was to come, my son started rocking and his friend grabbed his hand.  I watched them walk together in the hallway and heard this sweet boy tell him the bus wouldn't be so scary.  As we pulled away from the school he told my son he could cover his ears when we got to our destination if it was too loud.

I couldn't ask for a better friend for him.  A friend that is so accepting and aware of the issues my son faces.  A friend who has Treacher Collins Syndrome and partial deafness and has overcome so much already in his own young life.  The other children talked to my son, too.  The boy who sat across the aisle from them called for my boy by name to look out his window at the Christmas lights we were passing.  There was a time when I was so leery of special ed classes and the special bus, but now I see a safe space where my son is not judged.  He is not only accepted; he is liked.  He has friends.    

One of his other friends could not go today due to a seizure and hospital stay.   So, yes, you come to a point where you are not only okay with your child riding the short bus you are ecstatic that he can and did.  Right now seeing him happy and healthy, growing and learning is everything I could ask for and anything else is just noise.  We have hard days.  But today was a good day.  Today he rode the short bus and it was perfect.

Tuesday, November 24, 2015

My son is making progress and I'm pissed

I have shared recently the progress our son has made working through and overcoming some of the obstacles and challenges he faces due to his autism.  Some responses have been negative noise claiming we are trying to change our child.  I know our intentions and I know my son, so I ignore those.  Most responses have been positive and many are cheering him on.  But one response that has been all too common and most misinformed when sharing progress is the well-meaning celebratory, "I'm so glad kids with autism have so much help these days" or something to that effect.  But, really, they don't.  When it comes to helping individuals and families affected by autism we are so many lightyears behind where we need to be it's despicable.

Don't get me wrong, I am grateful for the progress my son has made over the last few months, but another part of me is angry and disgusted it took moving across the country to finally get him the help he needs.  We are a military family and thus in a unique position in which we experience services and education differences from state to state on a regular basis.  Since our son's diagnosis we have lived in three different states.  He is five and was diagnosed at three years old.

To those who would say simply get out of the military and live somewhere with decent services: I would say getting out of the military would mean we would lose one of the few insurances that cover autism services at all.  While advocacy groups are working towards insurance reform, there are many individuals with autism whose life-changing outpatient services are not covered by insurance.  Many insurances that will cover therapies to assist those with physical disabilities will not cover those same therapies for someone with an autism diagnosis, even if their autism impairs them just as much as a physical disability.  Most families cannot afford to pay out of pocket for these services so their children go without.  Those of us who are lucky enough to have insurance that covers various therapies have to jump through constant hoops to keep those services.  In our case, for instance, Tricare has just come down with an entirely new protocol for our children to receive ABA (Applied Behavior Analysis, behavior therapy).  Part of that new protocol is my physician reassessing and verifying my child's autism and and the severity of his autism every five months (you know because kids so often grow out of severe autism *rolls eyes*).  With so much red tape, there is a backlog of authorizations and lapses in services occur.  These lapses often occur during critical times when our children are most likely to regress (like after a move when we have to go through this entire process again).

Every time I make yet another phone call to check on an authorization or to ask for the status of a referral (while my child goes without therapy for weeks/months as our insurance drags their feet on approval) I think of how many parents do not have the time or energy or knowhow to do this.  I think of how many families whose children are covered but the system is so damn complicated their parents have lost hope for their child to ever get what they need.  I think of how many parents have hung up the phone in tears after waiting for an hour on hold for answers they will never get.  It may be better than it was ten years ago, but this is still NOT a workable system.

Beyond the problems with insurance and costs is the issue of availability.  There are so many families in rural areas and even those that are just outside of metro areas who cannot access services without driving two hours each way.  Even in metro areas families are looking at months or sometimes even year-long waitlists for their kids to get the therapy they need.  Imagine your child not being able to feed himself or dress himself or communicate with you.  Imagine knowing there was something out there that could help him, but having no way to access it due to cost or where you live.  Many have picked up their entire lives to move to states with better services, but that's not plausible for everyone.  And how many parents would have to move away from their entire support system that special needs families so desperately need just to get services?

Our special education system is even more broken than our health system.  From one state to another the disparity in public education and district services is enough to make me sick.  School districts think they are saving money by curbing the amount they spend on early intervention and preschool services, yet this is the time when our children can benefit the most from services.  And yet we have governors calling for even deeper cuts and some calling for the elimination of their entire early intervention programs.  Our leaders and their constituents are completely disregarding the fact that without that essential early intervention and spending they will be spending even more on their special needs population as they get older and are less equipped to function in the world around them.  Until current federal IDEA regulations are enforced in every state, our children will still be far from getting the help they need.  How can we say things are better when over half our population is still going without services or receiving so little that it doesn't make a difference in their lives?

Individuals in the autism community fall victim to a broken mental health care system as well.  Autism is often accompanied by comorbid disorders (like anxiety disorder or bipolar disorder, to name a couple) that require psychiatric care and/or medication.  Finding professionals to treat children or adolescents with these issues is next to impossible in many areas of our country.  As a result, families can be enduring a true mental health crisis with aggression or suicidal tendencies and have absolutely nowhere to turn.  Pediatricians will not medicate with psychiatric medications and wait lists for child psychiatrists and developmental pediatricians can be years long.  What is one to do when their child is a danger to themselves or siblings and no one will treat them?  It's a very real problem that far too many in our community are facing everyday.

Since moving to a state with preschool services our son has thrived.  Since pushing and calling and pushing some more our son is finally getting the amount of in home services he should have been getting all along.  Since moving to a metropolitan area this time around we finally have access to a developmental pediatrician that is helping him work through all of the mental health issues that so often go hand in hand with autism.  He still struggles everyday, but now it's a battle he at least has a chance of winning.

I look back at the time lost and it makes me angry and fills my head with what ifs regarding where my son is today.  I think about that huge percentage of kids on the spectrum not getting the services and education they need and I can't help but think what if... What if every child on the spectrum had access to occupational and speech therapy?  What if every autistic child had a school system that supported them and had the funding to back educators and therapists that could make a difference in their lives?  What if every parent trying to get in home behavior and developmental interventions for their kids didn't have to spend ten hours a week on the phone just to be pointed in the right direction?  What if every individual with autism who had underlying mental health issues had access to a psychiatrist early on that could help them and their family through the darker days?

The numbers are in and autism is not going away.  How can we move forward when an entire subset of our population does not have the supports in place that they need to be as successful as they can be?  How different would their lives and their family's lives look if that support was there?

So, no, I'm not happy that there are now so many more options and therapies for our kids with autism.  It's not good enough...not by a long shot.  This is the reality of the situation and it sucks.  What good are all of the life changing therapies in the world if no one can access them? Too many in our community are hanging on by a thread and we are far from "there" when it comes to the support and help we need.  They deserve better.  That is the reason we are loud about autism advocacy.  That is the reason I am angry about the current state of autism services and supports.  And as an advocate, as a citizen, as a person it should make you angry too. 


Friday, November 6, 2015

I Am Thankful

It has been a year of ups and downs on this autism journey.  But in everything, I am thankful.

When the kids are wild and loud and messy, I am thankful.  Chaotic happiness is always better than quiet tears.

When our marriage is strained from the stresses of special needs parenting, I am thankful.  We have made it through another year and I still have a confidant, a shoulder to cry on, a partner.

When our son screams that he is angry or hurting, I am thankful.  It wasn't long ago he didn't have the words to tell me.

When he rocks in public and I get strange looks or rude comments, I am thankful.  He is learning to calm himself when this world is just too much.

When he falls to the ground and melts down in a parking lot, I am thankful.  I am still strong enough to keep him safe until it passes.

Though he only eats eight foods, I am thankful.  Last year he only ate four.

Even though he wakes up every night, I am thankful.  He used to go days without sleeping.

When I think of all that time lacking services and falling behind, I am thankful.  At this moment, he's getting what he needs.

As I sit in waiting room after waiting room for hours, I am thankful.  There are so many lacking care.

When I feel exhausted and drained, I am thankful.  I have three beautiful children whose energy and love of life wear me out everyday.

When I see on the news another child with autism has wandered off my heart breaks, but even then I am thankful.  My child is safe and with me yet another day.

On the days all my time and energy go into helping him cope, I am thankful.  His family understands.

And even on our hardest days, I am thankful for those still there for me so that I can be here for him.

He has taught me to find the wonder in the mundane, to see the beauty through the pain and to believe in the impossible and for that I am thankful.

Saturday, October 24, 2015

Dear Senator of the Land Lacking Services: Our Year in Review

*** A letter written to the leadership of Alabama at the request of one of E's former teachers who is fighting to get better services and special education in her state***

Dear Senator,

I have been asked to give you a glimpse into what it is like trying to get services and appropriate education for a child with autism in Montgomery, Alabama. We are a military family and we recently moved away from your state.  We are now living in DC and my son is recovering from our time there.

I say recovering, because our year in Alabama was the worst of our lives.  My son didn’t regress from moving across the country or living in a new house.  He regressed from falling off a cliff into a land of very little services for autistic children with seemingly no priority for special education.  

Upon finding out we were going to be stationed in Alabama, I worried a bit that services would be different.  But we were only going to be there ten months and we would be living near the state’s capital, surely we could make it work.  After all, the alternative would have been to separate our family from my husband for a year—my husband who has already missed major milestones for our children, who has in the past been in a constant deployment cycle, who was coming off of a position in which he worked 14-hour days.  Staying together as a family seemed like the right thing to do.

Before moving I found a center in Prattville where my son could get Occupational and Speech therapy.  I made contact with an ABA provider (Applied Behavior Analysis—the only clinically proven treatment for autism) and got my son on their list and I spoke with Autauga County Schools to see how we would transition from our current state to Alabama/Prattville schools. 

Because I found providers that seemed to meet all of my child’s medical needs, the military approved our move.  They didn’t take into consideration that the county to which we were moving was not following the IDEA and could not provide proper special education for my child.  I was taken aback when the preschool special needs coordinator of Autauga County let me know they did not provide special needs preschool.  She gave me a few numbers to try and said that I would have to find a private preschool that would accept him and then they would bring their services to his school.  Well, there is a reason, Senator, as to why special needs students are federally mandated to receive preschool from the state.  Finding a preschool to accept a severely autistic child still in diapers was next to impossible.  After having preschools hang up on me, fail to return my calls and straight up tell me they would not accept a child with autism I called the county back.  The coordinator then told me that she wasn’t surprised.  She said people there just weren’t very accepting of “special” kids.  You can imagine my shock and anger.  After ten more calls I finally found a church preschool that was willing to accept my son as a student.

So we moved to Alabama in the summer of 2014.  Upon getting there and trying to begin services with all of the contacts we made we hit more roadblocks.  Our son was put on a waitlist for outpatient Occupational and Speech therapy evaluations.  We discovered that the only place that offered these therapies in Prattville had lost their only speech therapist.  We were strung along for months and being told if we wanted to drive to the other side of Montgomery the waitlists there were just as long.  So outpatient speech went on hold.  Our son was 3 at the time and the loss of speech services at a time when we were finally making progress was detrimental to his development.  A few months later they lost their occupational therapist as well.     

We were even more disheartened that the life altering ABA our son was supposed to start receiving was so limited it would hardly be beneficial.  We were told by Tricare that based on our son’s severity we could be getting up to forty hours of therapy a week.  This may seem like overkill but the American Academy of Pediatrics recommends at least 25 hours of ABA a week for an autistic three year old to make successful strides.  There were unfortunately very few providers in our area, not in Prattville, not in Montgomery and virtually no providers set up to offer tiered model services [where therapy is given by both BCBA’s (Board Certified Behavior Analysts) and behavior techs to maximize quantity and quality of care].  We were initially told our son would be getting 10 hours of therapy a week, but we never saw more than 4 a week with the first provider.  He was stretched thin driving from one county to another to provide services and he often would show late or not show at all.   He told us that with no state mandate for health insurance to cover ABA therapy, military families were the only ones covered and therapists had no incentives to practice there.  He said he couldn’t find qualified techs to provide more hours.  Meanwhile I was making more phone calls to see if there were any other ABA providers that could provide better care.  I was given all of the same numbers…all dead ends or waitlists so long we would not be seen until after our 11 month assignment was up.

With outpatient services clearly lacking our last hope was that the school district would be able to provide us with some support.  We were not so fortunate.  Our son with a severe autism diagnosis was given 40 minutes of speech a week (broken up into two sessions), 40 minutes of occupational therapy a week and 40 minutes of “special instruction”.  We had been coming from an IEP where he had 15 hours of school a week and a speech therapist assigned to his classroom who worked with him every day he was there.  A setting in which he was making great strides.  Even in the transitional IEP period Autauga county ignored the laws that state an IEP incoming from another state must be followed until a new one was agreed upon.  Our son having just been diagnosed, we were new to the system and confused.  We pressed for answers, but were told time and time again that funding for special needs preschool was not in the budget.

And our son regressed further into his own world.  I was carrying him in kicking and screaming everyday to a preschool that was not equipped to handle him.  He would try to run out of the classroom, he would sometimes scream nonstop because he couldn’t handle the commotion of the classroom, he would throw chairs and attack his brother (who also attended the school) when other children would cry.  The teachers were caring, they tried their best to accommodate us, but there were so many mornings when I left in tears because going to school had become so traumatic for him.  There were mornings where he would fight getting dressed for an hour and I would throw in the towel because I didn’t have the stamina to put up the fight to get him there.

Without any level of quality behavior therapy, his at home behaviors began to spiral out of control.  We had broken televisions, siblings with bruises and bite marks, and our household was going through a trauma that you can’t begin to imagine.  Our almost four year old (at a hefty and strong 45 pounds) had me in tears on a daily basis.  I worried for my other children’s safety more than anything else.  We knew it was just a matter of time until he put one of them in the hospital or worse.  I called everyone I could think of and no one was of any help.  I called our doctor daily to ask if we were any closer to finding a developmental pediatrician she could refer us to so that we could medicate him and hope to get the aggression under control until we had better therapy options. 

I was put on hold, brushed off, told that they were doing the best they could, told that I could leave yet another voicemail.  None of the pediatricians within 100 miles of the state’s capital were comfortable prescribing psych medication.  I called psychiatrists and psychologists only to leave messages that were never answered.  On one of our worst days, while he was screaming and I was sobbing, the nurse finally came to the phone and finally got us a referral to a psychiatrist that would see him, but we would have to go through another month of hell before we could be seen.

We eventually pulled him from preschool, feeling like we had no other choice.  At our own expense, we found a special needs school that would take him and who had experience with children on the spectrum.  The school was great for him, but we found it too little too late and he was only able to attend for a few months.  My guess is that this school (New Hope Academy) is probably the only reason Autauga County has been able to continue with offering such abysmal special needs education to their youngest students, the ones who need it and can benefit from it the most. 

When I spoke to an advocate they agreed that Autauga County was breaking a great deal of federal mandates, but the only way to get them to change their policies would be to sue the district.  We have acquaintances who are also military who went through a similar ordeal in Montgomery county and had to sue the county, which hardly seemed practical seeing as how we were leaving the following summer.

We bounced from one ABA provider to the next, all promising they could offer us more hours, all not being able to provide services or being able provide a couple hours every few weeks.  About six weeks before our time ended we were able to finally get 8 hours of ABA a week and found speech and occupational therapy 45 minutes away after enduring a long wait list and that was only because I spent 10 hours a week on the phone trying to make it happen.

And then we left.  And now he is getting what he needs and he is recovering from a year that was very hard on all of us.  It is always a fight to get him what he needs, whether it’s a fight with insurance or a fight with the school district, but here we at least have a chance at winning those battles.

In Prattville, Alabama the cards are stacked against children with autism, they have very little hope of accessing the care they need to meet their highest potential in life and sadly many of your residents are unaware that such life changing therapies even exist.  I can’t describe to you how heart wrenching it is to know there is something that could be saving your child’s life and mind and not being able to access it due to funding and availability. 

I think of all of the families still there and how much money the state and federal government will have to spend on those individuals as they age out of a broken system without having been given the tools they need to succeed in life.  I think of friends we have and the tears they have shed for their children knowing they will not get the chance to succeed because legislators in your state and school administrators in your districts do not think their children’s education or quality of life matter.

The Air Force sends their best and brightest officers to Maxwell AFB for Command College and War College.  Unfortunately, it is becoming quite clear that the Montgomery area cannot support families with children with autism due to a lack of services, a lack of qualified providers and profound deficit in its special education offerings (particularly at the early intervention and preschool levels).  We, along with several other families, contacted the Exceptional Family Member Program office at Maxwell—the office that clears families to be stationed there—and informed them of the dyer situation.  We were very adamant that families with children with moderate to severe autism should not be stationed at Maxwell AFB.  Once the EFMP office starts turning down families to be assigned at Maxwell, airmen will have to come to Maxwell without their families, pay for living in two separate locations and their families and morale will suffer.  Not to mention if airmen are coming without their families, they will not be renting out the same caliber of housing, the local economy will not benefit from the spending the family would have been doing in your stores and restaurants.  Having the Air Force colleges located at  Maxwell is not sustainable if the counties surrounding it cannot meet minimum federal standards in providing special education to our children. 
This is our family’s story, but rest assured, EVERYONE who has a child with moderate to severe autism is going through this horrific struggle throughout most of your state.  Even though we are no longer stationed there, my heart aches for that special needs community.  I am hopeful that the leaders of Alabama will step up and pass legislation to mandate autism insurance coverage.  I am hopeful that the leaders of Alabama will acknowledge the shortcomings of their public schools and enforce federal and state laws that are already on the books.  Money set aside for special education should not be allocated into different areas.  Studies have shown spending on autism intervention early on can save states a great deal of money in the long run.  If children are given a strong foundation, they have a better hope of mainstreaming and not needing lifelong support from the state.  Even with that being said, I hope leaders of your state will stop looking at the bottom line and realize these numbers have names, they have faces and they have families.  And you are in a position to help them.

Mandy Farmer  

Thursday, October 22, 2015

When Therapy is Working

I often share our son's successes; the seemingly minor milestones to some that mean so much more to those in the autism community.  Sometimes it's a new food he has started eating.  Sometimes it's a trip to the store without a meltdown.  Sometimes it's saying a full sentence and shocking us all. Always it's the direct result of therapy that's working.  Some of these therapies have recently come under fire for trying to change the core of who our children are.  Some are questioned for their effectiveness and quality.

Unfortunately, we have experienced therapy that doesn't work with a few therapists who just didn't get it.  Thankfully, we have also worked with a lot more therapists who measure their own success by the difference they make in our son's life.  And that difference has been remarkable.

When therapy is working sessions are filled with laughter and smiles.  When therapy is working he is learning and growing but thinks he is playing.

When therapy is working obstacles are overcome and anxiety lessened.  When therapy is working there are calming hugs and deep breaths when things get a little harder.

When therapy is working there may be tears of frustration when he can't quite get it.  But there are definitely tears of joy when he finally does.

When therapy is working he is learning to regulate his senses and in turn is beginning to make sense of the world around him.

When therapy is working the therapist listens to him and watches him to gauge how things are going.  When therapy is working the therapist listens to us, his parents, to know in which direction we should be heading.  And we listen to them to learn the best way to get there.

When therapy is working his siblings no longer fear they will be hurt by him.  They hug him.  They laugh with him.  Because therapy is working he is learning to know how he is feeling and how to cope.  He is learning how to tell us those feelings too.

When therapy is working we are not focused on changing who our child is.  We are focused on giving him everything he needs to be the best version of himself.

When therapy is working they are peeling away the obstacles that try to impede him everyday so that we can see HIM.

When therapy is working he is respected and loved and the results are beautiful.

Sunday, October 11, 2015

The Little Boy Who Never Came Back to T-Ball

A few weeks ago I was able to go solo to my oldest son's second T-Ball practice.  I was elated.  He was happy.  He was excited.  He was so very ready to play.  He talked freely and openly to all of the other kids on his team.  I could tell he was already making friends and I wasn't a bit surprised.  I spoke with the other moms and we talked about kindergarten, elementary schools and neighborhoods.  We all laughed as we watched our kids run to the wrong bases and the coach quickly averting crises by redirecting wayward swings.  I was so caught up in being normal, that I almost missed the little boy who should have been playing but was hiding behind his mother's leg crying.  Even though they were standing right next to all of us other parents, there was a wall between us.  His mother was not enjoying the moment, she flashed us a forced smile, but she was stressed and embarrassed.

My husband had told me that at the first practice there was a quiet little boy who seemed terrified to play or talk to the other kids.  My oldest had talked to him and tried to convince him to come out on the field with the others, but he was immovable.  Sometimes hiding behind his mother.  Sometimes dropping to the ground and crying in protest.  We had talked to our oldest about it and explained that he should keep being nice and keep trying to include that little boy.  Maybe he was new to sports, maybe he had never been around other kids, maybe there was something else going on.

The coach had made an attempt at the first practice to encourage him to come out onto the field; no such attempt was made at the second practice.  One of the other mothers asked him why he wasn't playing on the playground with the other siblings.  He averted his eyes and his mother explained he was actually on the team.  As construction noise buzzed from behind the field, her son covered his ears, plopped on the ground and drew his knees to his chest.  It looked familiar.

That anxious look on his mother's face looked all too familiar too.  That worry in her eyes that at any moment her little boy was going to lose it and mortify her.  I tried to separate from the moms chattering about PTA and picnics.  I reassured her that our oldest was very scared his first time playing a sport and that I was sure her son just needed time to get used to the idea.  She was grateful for the conversation, but not convinced.

That wasn't what I wanted to say to her though.  I wanted to reach over and give her a hug to calm her frazzled nerves.  I wanted to tell her that although I was at the practice beaming over my social butterfly, I had another little boy at home with his daddy who couldn't have handled the noise.  I wanted to tell her about the time we tried gymnastics, and our youngest son completely lost it in the middle of the gym.  How I had to stay right with him for every transition while the other preschoolers walked in line from one room to the next without issue.  We didn't return to gymnastics.

I wanted to tell her how alone I felt at the work picnic when my youngest son wouldn't play on the play ground with the other kids.  And how embarrassed I was as I chased after him and how he would fall to the ground and scream every time I tried to turn him around.

I wanted to tell her it gets better and that even if T-Ball is not in the cards for her son, they will find other things he enjoys beyond measure.  I wanted to tell her even if her son couldn't handle such a big group that with lots of planning and preparing successful smaller group activities could be in their future.

The fear that I was overstepping kept me from saying all of that, but maybe I should have.  The fear that my observations would offend kept me from being open.  I reached out and my son reached out to hers again and asked if he wanted to stand next to him and wait to bat.  He resisted again, but I could tell it meant the world to his mom that we were trying.  She insisted they would keep coming, even if he sat on the sidelines and just watched the other kids.

They never came back.  Nobody asked where they were or what happened.  And even though we knew and we tried harder than most, it wasn't enough and we could have done more.  When did we become a society in which reaching out to someone struggling is out of the norm?  How do we preach inclusion to our kids and yet rarely practice it ourselves?

I fear we are all so preoccupied keeping up the facade of normalcy that we are unable to see the beauty of difference.

Sunday, September 6, 2015

To Tell or Not to Tell: The Autism Parent's Dilemma

I have had a few people ask me when it was that we decided to tell our friends and family about our son's autism diagnosis and how we came to that decision.  I can't remember the exact conversation my husband and I had.  At one point, in the middle of the diagnosis process, I remember we thought the results might put him in a gray area and we talked about keeping the information to ourselves if there was any question or if his diagnosis fell into the mild category.  Or maybe we would just tell everyone early intervention was for a speech delay (like we thought ourselves early on).  But as the results from the district, the medical professionals, and the psych professionals came in, we began to realize that what we thought was a delay was actually something that would put our son in the "different" category for the rest of his life.  We had a choice.  We could explain away all of his therapies and special preschools and hope he "normaled" out by the time we had to decide special education or mainstream.  We don't live near any family, so we could just not share any of it (the diagnosis, the therapies, the progress, or the struggles) and hope that the once every couple of years we saw family that he would be further along or have a good couple days in a row.  Or we could be an open book from beginning to end.

I can't speak for my husband, but when we got the diagnosis I was relieved.  Sure, there was a part of me that was shocked, saddened, and angry.  But overall I was grateful that professionals were finally listening.  I was grateful for the doors that the diagnosis would open.  I felt like I finally had an explanation as to why every family friendly work function was a complete disaster for us.  I finally could wrap my brain around why eating, sleeping, bathing and outings were ALWAYS battles that I couldn't even come close to winning.  There was a reason behind every end-table in our house being flipped over in a violent rage.  There was a medical cause as to why our son would never sleep.  I wasn't a bad mom.  I hadn't lost my mind and completely forgotten how to get a baby on a schedule or how to plan well enough to have a successful outing with a toddler.  There was finally a reason why none of that was working and it wasn't me.

But more importantly than a reason, a cause, an excuse was the amazing realization that there was help and hope.  Once we finally had that all-mighty piece of paper with "code 299.00 ASD" written on it, we finally knew how to help him.  We finally had doors open to him for life altering therapies.  We finally knew where to start researching and how to apply all of that to make his life easier.  And as we muddled through the massive amount of research, the massive amount of literature, the unfortunate amount of garbage out there, and the like, I needed the support of friends and family.  I needed the support from others going through the same thing.  The beginning of our journey with all of its unknowns was a very scary and lonely place.  We were going through a major life event and we couldn't hide it and after the initial shock I didn't want to hide it.  I don't know where I would have been without support during that process.  As the process and the struggles went on not only did I need the support, but I wanted to give support.  I initially started my blog about motherhood, but "came out" with his ASD diagnosis in hopes that our story would reach that family at the beginning of their journey or maybe even the family that didn't yet know what they were experiencing.

We, of course, thought about how the label would affect our son as he gets older.  But the thing is his autism is a part of him and whether we acknowledge it publicly or not, he will be seen as different from the rest.  His speech delay, his stims, his repetition, his motor delays, his sensory issues are all there with or without a label.  We maybe could have kept the diagnosis under wraps for awhile, but not for long.  Whether we tell friends and acquaintances or not, if we are doing everything we need to support him (the therapies, the special needs classes, the district services) it will be fairly obvious he is on a different path than that of his peers.

We also thought about how people may treat him differently if they knew.  And there has been some of that.  We as a family have been treated differently too, even by some of the people who were closest to us.  But there has also been an outpouring of understanding and accommodation.  When I stopped trying so damn hard to have the perfect, normal family and just started doing what needs to be done to take care of that family, everything became so much easier and so much less stressful.  Once I was honest about why we couldn't come to the base picnic or the Halloween party friends may not have completely understood, but our choices made more sense.  Once I could lay out all of his struggles with transitions, travel, airplanes and elevators most of our family understood why we don't always make the trip back home for the summer or holidays.

Sharing his diagnosis, sharing our journey is very personal.  A personal decision that some autism parents make early on, some make later on, and some choose not to share until the child can decide for themselves whether or not they want others to know.  While we have decided to share early on, I know it's to his benefit, not his detriment.  I hope when he looks back at our openness, he will be proud of how far he will have come and proud of who he is; just as we are and have always been proud of how hard he works to be successful in this world despite his challenges and with his differences.  And I hope the struggles and triumphs of his story continue to encourage, inform, and inspire.

Wednesday, July 29, 2015

Our Sharing is Not Shaming

I finally read the blog post that is calling out parents of children with disabilities for shaming their children by oversharing their experiences, their photos and the details of their days.

First of all, I will say I understand the point of view from which the author is coming.  I think there is a line that should not be crossed and I would hope each parent would take their child's dignity into consideration when they are trying to raise awareness and let the world know how certain disabilities impact individuals and families.  I would also encourage readers to read the post script, as I think it further explains the author's perspective and clarifies not all sharing by parents of children with disabilities is considered shaming or oversharing.

Ms. Findlay does mention one "shame" of which I have been guilty: "sharing stories of autism meltdowns."  This is something I do pretty regularly, as we experience them pretty regularly.  This is not something that I feel is wrong or demeaning to my child.  I share these stories so other caregivers of children and adults with autism do not feel alone.  I share these stories so that others on this journey who are further along than myself may offer advice to those of us who are still trying navigate how to best help our children when they are experiencing a meltdown.  I mostly share these stories so the world outside of our community will know how incredibly out of control and difficult autism can be for individuals on the spectrum and for those providing these individuals care.  Our friends, our families, our communities and our leaders need to know that many individuals with autism AND their families are struggling and not getting nearly the help they need to help those on the spectrum meet their potential.  Many families and individuals in our community are not getting the help they need to merely survive day to day.  Does this mean I am going to take a video of my child throwing a television across the room or attempting to beat the snot out of his siblings and post it all over Facebook.  No.  But I want you to know it's happening.  I want the medical community and legislative leaders to know that it's happening and, more importantly, that they need to give a shit.  Because there are days when we feel like we are drowning and gasping for air.  There are caregivers that are on the brink of their own mental breakdowns who are reaching out and not being heard.  And on those days sharing that pain and that exhaustion with others who have experienced the same may be all that keeps us going.

I try to focus on the positives.  I glow with pride at my son's reaching of milestones and growth and I share them to give hope and inspiration.  If and when he can read and comprehend my blog posts, he will know that we had hard days, but he will also know how far he's come.  And I won't hide that from him.  Ever.  I think autism acceptance that refuses to address the difficult aspects of our days and our fears for the future is not true acceptance at all.  I think that kind of acceptance indicates we are ashamed of those aspects of autism.  Wouldn't that be the opposite of acceptance?

As a parent of a child with a disability, as his experience is relevant too.  I hope my child grows into a refined, well-spoken self-advocate, like Ms. Findlay.  And maybe the disability blogosphere is too much of the parent's perspective without enough written by individuals with disabilities.  But the fact is that for many of us with children with cognitive delays and impairment, we, the parents, will always be our child's only voice.  Please don't attempt to silence that voice.

Tuesday, July 7, 2015

The Two Words You Can Say to Someone Facing a New Diagnosis

We have moved across the country again and have been at our new home for a couple of weeks.  I must admit, I feel like a veteran autism mom this time around.  Even though we are still early on in our journey, this move went much more smoothly.  Services for our son have already been established (services I have been working for months before the move).  I walked into his new district building with two former IEPs, his medical diagnosis, birth certificate, lease, medical records, and slew of other paperwork.  I filled out registration papers with three kids climbing all over me and trying to tear down the waiting room and I didn't bat an eye.  I've got this.

As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their children and I didn't know what to say.  I think I found myself tongue-tied because all I could think about was all of the things not to say.  All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife.  During my discussion with these moms all of those comments came rushing back into my head.  Some almost came out, because I just didn't have the right words in that moment.  Wow, this is what it feels like to be on the other end of this conversation.  Even without the right words early on I just couldn't bring myself to say the wrong ones.

I wouldn't say "I'm sorry."  I heard a lot of these.  And they were always empathetic and heartfelt.  But they made me feel worse, not better.  I didn't want people to be sorry for me.  While this life might be different, it is not less.  While my child might miss out on some things, he is not less.  His life and his diagnosis are not things I feel sorry for, you shouldn't either.

I couldn't say to these moms "He'll be fine."  I don't know if your child will be fine.  I don't know that early intervention will move mountains.  I don't know what the next twenty years looks like for you and your family.  And when people told me "You caught it early, he will be fine..." it hurt.  If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed?  Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine."  ASD is very complex and no two journeys are the same.  Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.

I knew better than to say "Really?  He seems so normal."  I was surprised by how much I heard this one.  It seemed like an attempt at a backhanded compliment.  But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.

I would never say "Oh, I hope not."  I only got a few of these doom and gloom responses.  They lacked empathy and pretty much damned us to a life of a misery in one simple phrase.  It is not a comfort and it is not helpful to try wish away a family member's diagnosis.  It's hurtful.

You see, all of those are overthinking and overanalyzing someone else's situation.  Those phrases do not comfort, they simply insert my opinion when my opinion was not asked.  Parents facing an ASD diagnosis do not want unsolicited advice or pity.  They do not want you to minimize their feelings or give false hope.  They want you to listen.  They want you to care.  They want you to stay in their lives and not brand them as special needs parents.  They want you to understand that although their lives might be taking a different turn, they still need friends.  Their children still need friends.

Then it came to me.  The two simple and perfect words you can say: "I'm here."  And mean it.  Mean it through every struggle, every victory and every passing year.  Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands.  Mean it when you are making out the list of which children to invite to your child's birthday party.

They don't need you to be an expert on autism.  They don't need you to always say the right thing.  Now, more than ever, they need you to just be there.

Saturday, May 23, 2015

To the Caring Teachers of the Little Ones with Special Needs

I don't know your background.  I don't know why you chose this profession.  I don't know where your inner strength comes from or what keeps you going.  I don't know if you will keep doing this or if you will move on to other jobs.  I don't know how much of your day you take home with you at night.

But this is what I do know:

I know you care for our children as if they were your own.  I know you celebrate every single little success they have, because you know just how hard and long they had to work to achieve it.  I know you watch them develop and your hopes for them go far beyond your classroom.

I know you hear the same news stories I do.  I know you cringe when you hear of a teacher who hurt a nonverbal child.  I know your heart aches that you have to work so hard to earn parents' trust and you wish they knew that for every one abusive teacher of special needs children there are a hundred more that would do anything and everything to protect our children.  And because you are that teacher who would do anything to protect these kids, you have no problem earning our children's trust and earning our trust.

I know you have hard days.  I know you juggle the needs of many children at once and have to work constantly to maintain the peace in the classroom.  I know you stay up late working on things for the next day and stay at work late to make sure your classroom is "just so" for tomorrow.  I know you have to work harder than your fellow teachers who teach typical children to think ahead for the day and to try to see and prevent potential triggers and obstacles that might make our children's days that much harder.  I know the hard days have been physical, but you press on, you don't lose your cool and you hope tomorrow will be better.

I know you probably have days when you wonder if all of your patience and heart and perseverance are noticed.  I know you might have days when you want to throw in the towel and move on to something easier.

I hope you know that I see your passion for these children.  I see the excitement in your eyes when mine does something new or overcomes something that once would have set him back.  I see how hard you work to ensure he has successful days.  I see you on the hard days and I know when he comes home upset, you may have endured a day of screaming and crying.  And I know you did everything in your power to calm him.

Know that you have given me a break when I needed it the most.  Know that you have given peace of mind about one aspect of our day to a parent who has to worry about so many other things.  Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face.  Know that every success our children will go on to have is the result of a foundation you helped lay.  Know that every struggle and every accomplishment in your classroom are stepping stones to a future they couldn't have had without you.

I know you wonder if you make a difference.  Know that you do.

A Special Needs Mom

Saturday, May 9, 2015

Baring all: A Mother's Truth

The baby years with each of our children have all been so different.  On the surface one would think that experience is completely shaped by the baby's temperament and the family dynamic at the time the baby is born.  While those definitely factor into the experience, looking back and examining myself as a mother, I see my outlook at the time, my own mental health and my support systems molded each babyhood and how I remember the early days in each case.  That being said and this being a piece about me as a mother and not my children themselves, I can say without guilt that I am finally enjoying motherhood and the baby years the third time around.  There, of course, were many happy moments with each child as a baby, but this time I'm in a better place and it's made a world of difference.  We still have rough days that gnaw away at my sanity, but, for the most part, we push through the bad ones and hope tomorrow is better.  That was not always my mindset and I know there are a lot of new moms and special needs moms that are still in that dark place feeling isolated, but you are not alone.

When I was pregnant with our first, I had everything planned out perfectly for how I would raise all of our children.  I didn't have a lot of hands on experience with newborns or young babies, but I had read everything under the sun about the best parenting methods and all of the latest studies for what to do with babies and what not to do with babies.  I knew that I would nurse until the baby was at least nine months old and I knew that I would try to get him on a schedule as early as I could.  I was nervous, sure, but I planned my way around the nervousness.  I had gotten my BA and graduated near the top of my class.  I had managed a law firm for a couple years after that.  So I was quite confident that I could handle anything this parenting gig had to throw at me.

We had our perfect baby boy at a perfectly scheduled induction with a delivery and post delivery that went perfectly.  Everything was right on schedule as we left the hospital to go home to our perfectly organized nursery.  I wanted to do everything right.  This was a human life so there was no room for error.

Nursing was going okay in the hospital, but once the soreness and the cracking started, things went south quickly.  I would power through it.  After all, all good moms HAD to nurse if they were physically capable.  Everyone talks about it not being easy at first, so I just assumed the pain I was experiencing was normal and that dreading the next nursing session to the point of tears would alleviate once we got into a rhythm.  It didn't.  The pain got worse, my production dropped off, infection occurred and because he was getting barely anything in his stomach he had to nurse constantly.  I sobbed with worry in the nights as I could tell I was not doing it right or something was not working.  My husband begged me to try formula for my own sanity, but my pride and knowledge of the "right way" to do things wouldn't let me hear him.

Much worse than the nursing troubles was the anxiety.  The anxiety about every little thing.  Was he too hot, was he too cold?  Was I putting too much water on his hair?  I completely stopped sleeping, even when he would sleep I was wide awake with worry, trying to hear him breathe.  After the third day without any sleep, I started hallucinating.  Even though he was safe in his pack and play I was completely convinced that shirt wadded up on the floor was his little body, that had somehow fallen out of the pack and play and my heart jumped into my throat.  At one point my husband found me with the baby crying in just his diaper and me with all of his clothes laid out on the floor trying to find something that was appropriate for sleep.  My brain was too bogged down with worry to even make simple decisions.

I had heard of Postpartum Depression, but I assumed if I was having PPD I would be weeping constantly, which I wasn't.  I didn't realize that extreme anxiety and sleeplessness were also symptoms.  I called to talk to my nurse about the sleeplessness and finally broke down into tears; they had me come in right away.  After talking to my doctor and realizing what I was experiencing went far beyond the baby blues, we decided on a course of action to get me functioning and feeling well enough to take care of myself and our baby.  One aspect of that course of action was to stop trying to nurse and although I was heartbroken, I knew it was the right decision.

The anxiety did not go away completely.  I was still a first time mom, after all, but with the proper medical treatment our schedule and routines started to fall in to place and my confidence started building in my abilities as a mother.  So much so that we decided to have another child close in age so that we could wrap up the baby years close together, the kids could go to school and I could go back to work.

Twelve months and ten days after the first we had another beautiful baby boy.  After everything I went through the first time, I knew this time would be better.  I knew how to do the baby thing this time around.  I wasn't worried about nursing.  If it worked, great.  If I started having medical issues again, I would not hesitate to switch to formula.  I had a plan, I knew how to get a baby on a routine and the order to introduce solids and how to time naps.

Aside from the very different dynamic of having a one year old and a newborn, there was something else that made this time so much harder.  I couldn't put my finger on it, but nothing was working.  All of the things that had worked with our oldest did not work with our youngest.  Nothing that I did seemed to comfort him.  We thought he must have allergies to what he was eating, as he seemed miserable all of the time.  I was elated when his first teeth broke through at four months old.  I thought the constant crying would stop and that must have been the issue the whole time.  It wasn't.

When the boys were six months old and 18 months old we moved across the country again to a new home.  I knew no one and my husband deployed three weeks after the move.  I made friends and we all got together frequently, but I couldn't help but feel like I was doing something wrong as I watched their babies develop, get on a schedule, and hit their milestones.  My oldest had hit all of his milestones early, but our youngest was not crawling, was not sitting up on his own and was not babbling.  Worst than all of that at the time was that he never ever slept.  With my husband overseas, I was essentially single parenting a young toddler and an infant on next to no sleep.  I would try to relay my concerns to my husband during our phone conversations, but with the kids always needing something it was hard to have an in depth conversation about my state of mind or my worries about development.

Our pediatrician continually chalked up our youngest's difficulties to just being a harder baby and being too stubborn to hit his milestones.  He insisted that I let him 'cry it out' to finally get him to sleep, which I tried to no avail.  He would hurt himself and cry so hard he would vomit.  Upon consulting the pediatrician again, I was told if I just let him go he would learn not to hurt himself or vomit because he would have to sleep in it.  I had never disagreed with a physician before and ended up letting him sleep with me instead, which I hated and swore I would never do.  Even with him lying right next to me, he still wouldn't sleep.  Every food, every transition, every everything was a battle.  A battle I was losing.  I can't help but think if I had had a pediatrician that would listen, or a husband home that was seeing the same things I was, or a friend who had been through it all and may have known what to look for, the mommy guilt may have not come on so strong.  I even took videos into our doctor to try to make them understand the extent of how upset he always seemed to be.  I don't think young parents would ever believe how naive many pediatricians are when it comes to autism and other neurodevelopment issues.  I took ours at his word and thought I was losing my mind or just a really terrible mom.  Or maybe it was all my fault because we had the kids too close together and all of our youngest's issues stemmed from me not have enough time or energy to tend to him properly.

It's amazing how as mothers we always turn inward and every problem with our children or our marriage we make our own responsibility.  And instead of lifting each other up and encouraging each other during our most isolated moments, we judge each other as mothers or feign understanding and compassion and then talk about another's decisions, methods, and struggles behind her back.  It's no wonder new moms feels so alone.  God forbid they voice their feelings or their shortcomings and be met by an army of judgmental women who are sure they have made better choices.

I am sad to say it's even worse in the autism community.  We judge each other's every move from treatments to labels to parenting methods.  So much so that the simplest things have become controversial.  And outsiders judge us too.  It doesn't help that we live in a society that always wants to place the blame on someone when we are dealing with something like autism, that we still know so little about.  And sometimes the people closest to us that should be our greatest support hurt us the most with their ignorant comments and their own need to place blame.  Parenting is hard, but made so much harder with the mom shaming and negativity that comes with it.  

But the third time around, I let all of that go.  Our third is a beautiful baby girl, who by all accounts is not nearly as easy as our first.  It's not easier having two other children, one of whom was a toddler with autism going through some of his most challenging moments when she was first born.  But this time, I made sure I was okay.  If I need help with the kids when my husband is away, I budget for another set of hands to help out every once in awhile.  When I feel like I'm about to lose it, I try to be better about communicating that to my husband so we can make a plan to alleviate some of the stress of being a full time special needs mom.

I don't play the mom judging game and I surround myself with others who feel the same way (most are in my computer, but I'm okay with that).  As far as the judgmental voices or chatter that comes my way, I have discovered life is so much better once you stop giving a damn.  But to enjoy the baby years this time around, the harshest critic I had to silence was myself.  Our lives cannot be completely scheduled or predictable, and that has to be okay.  Our house cannot be perfect, or even close to it, and if that means I get more time to play with my kids, I think that's a better deal.  The kids are going to watch tv so I can have my coffee, or do some dishes, or write and they are not going to be damaged if they watch one too many shows a day.  I won't send award winning cupcakes to school on party day; in fact, I might forget to send anything at all, but I will be enjoying outside time with the kids the night before and not cooped up in the kitchen.  The years they are little go by far too quickly and over-planning and worrying will not slow it down.  Quite simply, this time around the first steps, the first words, the first party, the day to day joys of having a toddler I have finally fully grasped because I've learned to let go.

Sunday, April 12, 2015

Higher Highs, Lower Lows; It is What it Is

As the feedback came in from my last post Please Don't Tell Me Autism is a Gift, there was one critique of that sentiment with which I could not disagree.  Some said that while they did not think it was a gift, it had opened their eyes, made them appreciate the small things and gave them perspective.

Am I saying I am thankful my son goes through everything he does so that I may come out the other side enlightened?  No, absolutely not.  I would not wish his challenges on anyone for any reason.  I just wouldn't.  For me, autism is not a blessing, autism is not a curse, it just is what it is. 

But just as I shared some of our struggles to give the outside world a peek into our daily lives, there is another aspect of this life that I find important to share to offer a more holistic view of this journey.

I would argue that we experience higher highs and lower lows as parents of children on the spectrum (or any special needs children, for that matter).  I can't really describe to you the feeling when a four and a half year old uses a spoon efficiently for the first time.  Remember how excited you were when your one year old used a spoon?  Now imagine how much more intense that excitement would be if you had waited four times that long to see it happen.  Not only had you waited, but you had worked and your child had worked tirelessly to make it happen.  We worked with an Occupational Therapist to try to teach the coordination it takes to scoop up food and get it into his mouth without spilling it everywhere. We practiced at most meals even though he preferred finger foods.  He often would not stabilize the bowl, he would get frustrated when the bowl would push around on the table and as he would raise the spoon to his mouth he would always flip it and lose most of it.  Then if any of it got on him he would have a full out meltdown about something messy or wet touching his skin or even his clothes.  I'm not going to lie, my heart soars every time I watch him eat independently, something I honestly took for granted with our oldest.

After so many hours of speech therapy and so much effort at home, listening to him form a sentence is almost magical.  There were so many times when he didn't have the words.  There have been so many heartbreaking instances when I would look into his eyes and feel like he is trapped inside himself.  Hearing him convey his fears, express his needs, voice his feelings; in those moments I couldn't be more proud of something so many take for granted.

When we have a successful outing (even a thirty minute trip to the grocery store) I feel like I have just run and won a marathon.  Do you know why I post about those good trips, why I sing my son's praises that he was able to handle the lights, the noise, the transitions?  Because we had so many trips that ended with me in the car in tears.  So many half full shopping carts that were left in the aisles because I just couldn't stand the judgmental stares anymore.  So many trips that resulted in entire days of trying to bring him down from the sensory overload.  His tears, my tears, so many tears.  So when we have an outing that doesn't result in tears, you're damn right I'm going to celebrate! 

And the nights...I can't really describe how hopeless I have been during the bad nights.  Not just nights when he was up and talking and I wanted to sleep.  Not just the exhaustion.  But so many nights we had meltdowns, screaming, self injurious behaviors and times when he would go after me.  He wasn't asleep, he wasn't awake, he was short circuiting and could not make sense of all his body was going through.  On those nights that seemed to last forever, I have never felt more alone.  But now, even though he never sleeps through the night, he gets up once and usually goes back to sleep within an hour without incident.  That might not sound like a good night to you, but I cannot even express how grateful I am for six hours of sleep and a night without him going through the trauma he used to.

Higher highs and lower lowers apply to our view of the future too.  After receiving the diagnosis and the prognosis, I mourned for the life he will not have.  I don't know that he will ever play a sport, live on his own, go to college, have a family, or have a job.  That is a heavy realization to have, one that continues to weigh on us everyday.  But even in that mourning there are glimpses of hope.  With every little bit of progress with language, with every new skill mastered, with every academic achievement, my heart smiles and I am so hopeful for the progress that lies ahead.  But, frankly, having witnessed him so fearful, so miserable, so pained; simply seeing him happy on the good days is enough to bring me unmatched joy.  I know with a lot of hard work and resilience the rest will fall into place and we'll be okay.  Even if that okay looks different than I thought it would.       

Wednesday, March 11, 2015

Please Don't Tell me Autism is a Gift

Every time I sit down to write, I often already have a positive message to end on in mind.  I don't have that today.  Today I am sad, I am angry and I am coming from a place that I don't often go: a place with walls papered by self-pity and lighting dimmed by exhaustion.  We have all been there, but of course, we try not to live there.

I read story after story that highlight the aspects of having a child with autism that are positive and uplifting.  I have written many posts that do the same.  I think these stories are important as they help to spread awareness and acceptance, they celebrate our children holistically, which is great because our children deserve to be celebrated.

I wonder, though, if sometimes we sugarcoat or put a positive spin on reality to make ourselves feel better or maybe to avoid coming off as a victim.  After all, bloggers who have written more negatively about their children with autism are often scrutinized and demonized.  Another reason I usually stay away from the negative: I don't want my child (or others with autism) demonized or people to think any less of him.

As positive as I try to stay, there is a reality with which we have to contend.  That reality usually gets to make a short appearance in my blog in sentences like "Of course we have our challenges." or "And even though he struggles..."  Anyone affected by autism knows those phrases are emotionally charged.

But I started thinking.  People outside of our household, people outside of our community, must all be scratching their heads and wondering if our children and their autism are so great and so gifted why are autism parents so vocal about needing help and advocating for their children?  Why would a savant be labeled disabled or need to receive special services from a school district?

Autism is a spectrum disorder.  No two people on the spectrum are the same.  Many of our children are not savants.  Many of our children are not even on target with their development for their age.  Many of our children will live with us for the rest of their lives.

So, please, don't tell me autism is a gift.  When my child has been screaming every thirty minutes all day long and we have to go to the store and he screams at the check out, the cashier telling me he'll be okay and will be great with numbers when he grows up is NOT what I want to hear.

When I look into my son's eyes when he doesn't understand his surroundings and his anxiety and fear are palpable there is nothing in this world I would not do to take that fear away.  You cannot look into his fearful, panicking gaze as he is shaking and cowering from everyday stimuli and tell me this is a gift or an enlightening experience.

Please don't tell me his autism is a gift as I take his little sister to the hospital for a concussion resulting from an impulsive outburst that he could not control.

When I see his older brother with tears in his eyes yet again because his little brother doesn't want to play with him or has lashed out at him, I don't accept that this is a gift.  He is hurting and his needs are put on the back burner everyday, I see no positive in that other than I'm hopeful it will build character and instill compassion in him.

As I bang my head against a wall just trying to get my child an education like everyone else is entitled to, I wonder if outsiders know just how "challenging" it is.  We are in a district in a state that won't even provide classes for preschool children with special needs.  So I found a private preschool that would take him, but he has so much anxiety about going every morning that he screams the whole way there and as his teachers carry him in.  I have a laundry list of therapies that are medically prescribed that I have to work around the clock to access for our child.  Once we finally have established providers we drive and we schedule and usually have some type of appointment everyday.  These are not groundbreaking therapies that are going to have my child doing quantum physics or painting masterpieces, these are necessary to get my child to function high enough to dress himself and feed himself and to allow him to tolerate being in a room with everyday noises.

And then there is the loneliness.  Please don't tell me autism is a gift when my child and his siblings are no longer invited to birthday parties because parents don't want one of my child's meltdowns to ruin their kid's special day.  When I stop having friends outside of the autism community because other people don't want to hear about autism and how it is consuming your life, it doesn't feel like a gift.  Unfortunately as much as it consumes our lives, it consumes our conversations too.  And that doesn't make for great girl's night out conversation.  I can't say I blame former friends for throwing in the towel, but that doesn't make it any less lonely.  The gift that keeps giving.

I know some will be offended by this post, but just as my opinion is that autism is not a gift; you, of course, are entitled to a different one.  For me, autism is exhausting and I feel like every minute of everyday is spent trying to break my child free from the anxiety that consumes him.

Please don't tell me autism is a gift.  My child is a gift; his autism is a disability.    

Wednesday, February 25, 2015

Giving Fear the Finger; Moving Forward

One thing I have noticed most about the special needs community is how overtaken we as parents are by fear and anxiety.  We worry about every aspect of everyday, not because we want to, but because there is so much going on in our lives that validates worrying.

We of course talk about the bigger things.  We worry about will happen to our special needs children when we are gone.  We worry about services and our children's schooling.  We are terrified of the next regression or the next problem behavior that could be lurking right around the corner.  We fear to have more children, because they too might have autism or another condition.

But I have also found myself engulfed by fear during our everyday lives.  I do not speed and I always use my turn signal because God forbid we get pulled over with my autistic son in the car.  It would be a nightmare he would scream and be overtaken by anxiety.  The officer would most likely be clueless and it could escalate into myself and my child being taken out of the vehicle or questioned or worse.

I fear every time we go into a store or a new place that there will be something that will upset him.  A child crying or the store testing their alarms (and yes that has happened, he was traumatized for months and always associated all Walmarts with that terrible sound) pushing him over the edge and causing a panic attack or meltdown from which he cannot recover.  Or even worse causing a traumatic sensory association that will stick with him for next forty outings we attempt.

Every time we lose a service or get waitlisted for a therapy I fear regression.  I fear skills we have worked so hard to master could be lost.  I fear without therapy he will be "delayed' in some areas much longer than he would if we were getting the right services.  I fear every move for this reason.

I fear ever being in a car accident with him in the car.  His brother once ran their power wheels into a tree while he was in it.  He would not get anywhere near the power wheels for months after that.  Once we ignorantly went through a carwash with him in the car.  It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car.  Can you imagine if we were in a car accident?  I fear he would never get back in a car without severe anxiety and panic attacks.

Every time I get into the car without my children, I worry that I could be in an accident and die and my children would all have it so hard and my son with autism would fall apart and regress so far into his own world that he could never be saved.  Every time my husband gets deployed or has to go overseas for work I fear something could happen and my children would be without a father and a provider and we would lose our health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me I panic and my heart jumps into my throat.  Is it him?  Did he get out of the school and get hit by a car?  Should I even send him to school if I can't be with him constantly to make sure he is safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him.  I cried before we gave our youngest her one year vaccines, because even though our son's autism had nothing to do with vaccines there is this culture of fear surrounding our special needs children due to the unknown.

I don't know about you, but there are days when I want to stay in a bubble with my family.  Days when I just feel paralyzed by the fear and anxiety.  But if I let that fear overtake me, I cannot live and maybe even worse my children cannot live and experience the world around them.  Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have everyday with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates and I worried (and still sometimes worry) about our third being more likely to have autism; we moved forward and I am so thankful we did because she is an absolute joy.  All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don't get to experience that happiness.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...